“You’re all familiar with the infamous ‘Bridge to Nowhere.’ Let me introduce you to what I call the ‘Research to Nowhere.” – Kim McCleary
The CFIDS Association’s November 2008 CFIDSLink e-newsletter, just out, provides a timely summary report on proceedings at the Federal CFS Advisory Committee Meeting – held in Washington, DC, October 28 and 29.
Serious Funding Issues Reminiscent of 1998
One highlight of the report is a transcript of CFIDS Assoc. President Kim McCleary’s straight-from-the-shoulder testimony to the CFSAC, presenting a detailed analysis of the CDC’s CFS research budget spending and oversight since 2004.
Though McCleary had originally planned to discuss public/private CFS research & education partnerships, she instead felt “forced to confront serious funding issues with the CDC research program, just as we were 10 years ago, in April 1998.” (When it was determined that $12.9 million reported as spent on CFS research was actually allocated to other programs.)
According to the CFIDSLink Report, and as detailed in her compelling testimony, McCleary:
• “Questioned CDC leadership, accountability and performance related to three contracts the CFS research program funded totaling more than $9.8 million that produced few results in 4 years.”
• “Stated that her testimony followed an extended series of discussions with CDC and that information about spending and obligations was provided by CDC, but it was not critically assessed by those with authority to alter the ineffective commitment of large amounts of money to unproductive contracts.”
• And “expressed concern about the peer review and urged the Committee to make recommendations that would lead to immediate corrective actions.”
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A Mix of Hopeful News and Other Concerns
Though much hopeful news was exchanged during the meeting – such as the Trans-NIH CFS Working Group’s plans for a State of the Knowledge conference for CFS in 2010 – other concerns, as noted in the CFIDS Association summary, include the following:
• “Dr. Eleanor Hanna, representing the National Institutes of Health (NIH), commented that NIH does not have confidence in the new definition for CFS being used by CDC and that it had resisted using the higher prevalence figures in its materials for that reason. She conveyed her concern that the use of different definitions made it difficult to compare results from CDC-funded research and NIH-funded research, and that this would present greater problems as treatments are studied.”…
• “Dr. Nancy Klimas remarked that CDC studies of psychiatric stressors were “way behind the times” and that the “emperor has no clothes” when CDC’s long-term studies of patients don’t produce any data about the long-term risks associated with CFS.”…
• “Dr. Leonard Jason, chairman of the CFSAC’s research subcommittee, requested data about the success rate for CFS grants after each step in the review session; [the NIH’s Dr. Eleanor] Hanna replied that she cannot provide such information without a request from Congress, and suggested that he should continue his dialogue with officials in NIH’s Center for Scientific Review (CSR).”…
As for the future, “[Dr. Steve Monroe, director of the Division of Viral and Rickettsial Diseases] confirmed that [Dr. William] Reeves was still actively involved in the research program and indicated that the peer-review of the program would take place November 5-7, after which CDC leadership would be making some important decisions about the future direction of the program.”…
Transcripts of Other Presentations Submitted as Public Testimony Include:
• A proposal by CFIDS Assoc. Scientific Director Suzanne D. Vernon outlining the benefit of a coordinated national CFS research network of government, academic, and private entities, guided by a clear understanding of the CFS research priorities, and sharing data, findings, and specimens.
• Researcher Marian Dix Lemle’s explanation of her intriguing hypothesis that dysregulation of hydrogen sulfide metabolism in the cells’ energy generating mitochondria plays a role in the multi-system disturbances of ME/CFS.
• CFS patient Brian Smith’s testimony regarding the economic burden patients bear when unable to work, and the need to explore difficulties associated with efforts to obtain Social Security Disability benefits (in stark contrast to other disabilities such as MS or limited vision).